Friday, September 17, 2010

One Lifetime, Many Lives

"I've been a puppet, a pauper, a pirate, a poet, a pawn and a king…""That's Life", made famous by Frank Sinatra

When telling stories about my past, I often find myself prefacing them with the phrase, "In another life…” Truly, some of the tales I tell from my personal history, given my current circumstances, do now seem to have been plucked from some other existence. My diagnosis of MS, and my subsequent taking leave of the working world due to disability, placed a full stop in the course of my life, creating a gaping chasm between my then and my now.

In retrospect I can see that even before my diagnosis, the whole of my existence could be divided into a series of chapters, defined by any number of parameters: age, location, relationship status, employment situation, emotional state. All of these chapters, though, shared a web of continuity, and although some changes were more dramatic than others, there was a narrative strand that bound them all together.

Not so with the chapter entitled "Multiple Sclerosis", which veered so sharply off plot that it not only transformed my physical reality, but in some very tangible ways forced changes to my very perception of self. The opportunities for introspection afforded by days upon days filled with no preordained activities have resulted in some unexpected realizations about myself, others, and the complexities of my previous, healthy, existence.

I grew up in New York City, and at age 18 left for college in Boston, where I wound up spending most of the 80s, first as a student, and then as a first generation slacker, living a very bohemian life as part of the city's musical underground.. After a brief return engagement in New York, the 90s found me almost accidentally residing in Fort Lauderdale, Florida, a place I'd never imagined I'd live, and where I never quite felt at home, but where my career took form, and the vagabond became, in fits and starts, a responsible citizen. The end of that decade found me gratefully heading back up North, home to New York City, whose rhythms I slipped back into with the ease and comfort of a favorite old sweatshirt, and which seemed as happy to see me as I it.

Of course, within each of those neatly divided geographic stanzas lie many different notes, some of them sweet songs of triumph and delight, others dark dirges of despair and disappointment. In between the highs and the lows were stretches of mere existence, the steady drone of days turning into weeks, and weeks into months. Along the way, as I navigated all of the peaks and valleys and long plateaus, I inevitably evolved and transformed. Looking back, there are some incarnations of myself whom I embrace fondly (I really like that guy in the 80s who dressed like a gypsy and thought he'd be the next Mick Jagger), and others at which I can simply do nothing but cringe and roll my eyes (not so fond of the fella who was such a fool for beauty that he allowed himself to be emotionally abused by a lovely sociopath). So many different me's, some who would barely recognize the others, but all of whom, for better or worse, equal the sum total of the person I am today.

Typically, for those enormously lucky enough to not step into one of the many calamitous pitfalls hidden within the landscape of life, there is little time for true reflection. Yes, when healthy I might occasionally give a peek over my shoulder at where I'd been, usually at times of joyful triumph or remorseful melancholy, but even at my most introspective I was far too immersed in the riptides of life to make sense of the complicated and often twisted and dented arc of my own existence. The emotions of the moment clouded such backwards glances, the past most often viewed as a kaleidoscopic jumble of my own history filtered through the realities of the present and my expectations of the future.

Those of us who the fates do lead to stumble onto the landmine called chronic illness are suddenly handed not yet another of life's many chapters, but a Part Two, a sequel of sorts, the lead actor plucked from familiar surroundings and dropped onto an alien stage. From this new vantage point, after the smoke clears, the rubble settles, and the ringing in your ears subsides, the life previously led can literally be examined as a finished product, complete in and of itself, disconnected in so many ways from this new and strange reality.

In some respects, the first few months of being on disability were almost akin to attending my own funeral. The life that I had known was over and drifting farther into history with each passing day. Now removed from it, I could view my past as a whole, a Rubik's cube that could be twisted and turned and almost made sense of. I could tease it apart and dissect it, isolate the many intricate and sometimes subtle connections between its many moving parts, and then carefully mull them over and gradually make an attempt at understanding. Eventually, I found that much wisdom could be extracted from the remains of the old me, or, more correctly, the remains of all the me’s I'd ever been.

One should be careful not dwell too long in the past, because it's very easy to get lost there and waste too many of the precious moments that make up the now. But the lessons learned from examining one's own history can be immensely valuable, and can serve as a textbook for making the most of the present.

In the Tarot, every deck contains the dreaded death card, a harbinger which is actually not so much a symbol of physical death but of the end of one phase of life and the beginning of another. Thus too the moment of diagnosis is an end but also a beginning. Despite the very real hardships and anxieties that come bundled with illness, this new beginning need not be one of unending misery, devoid of happiness and contentment.

Everybody's path to contentment is different, and after many years of seeking, I was surprised to find, from my new and uncomfortable perch, that one of the best ways to identify my own was to objectively examine my past, mindfully recognizing those elements that brought me joy and those that fueled disorder and discontent. By zeroing in on the diverse personas I had adopted at different junctures in life, with effort I found I could embrace and incorporate those I liked and respected, and discard the elements of those who I wished I'd never been. I finally understood that both joy and discontent are rooted deep within myself. Though external elements may trigger such feelings, the ability to feel them are entirely self-contained, and with effort can be controlled.

Within a single lifetime we all live many lives and play many parts. Suddenly facing chronic illness may force us to let go of one set of selves, but affords us a unique opportunity at redefinition, a chance to utilize the boundless wisdom we've gained by simply living but which we rarely stop to tap into, and to thus discover the true heart within. Every end is a beginning, and even if that new beginning has been forced upon us, and is filled with terrible unknowns, it is a chance at self-discovery. If you choose to take it, even tremendous misfortune can offer the occasion to be a better you than you have ever been before.

17 comments:

This is a magnificent review not just of your life but of the process of living. That chronic, disabling illness is part of the trajectory is, while not incidental, only informative. So many passages were so well written that after a while I stopped saying to myself, “l’ll start my comment with that line or that one….” and just read on. It is an interesting question to ask whether you would have explored this subject in this manner if you had not already been introspective before you veered sharply off-plot. Or did coming down with MS produce a greater propensity for introspection? I know that in my life, once I stepped off the corporate conveyor belt, I suddenly had permission to explore things like creative writing that I never had allowed myself to experience fully. The surprise was in finding out that this activity felt more natural to me than anything I had ever done in my erstwhile career. I would never say that I am glad I came down with MS, but I will say that I am grateful for the paths that have opened up for me as a result. Thank you, Marc, for a post that I am sure I will return to read again. Forgive me the cliché but you hit it out of the park. Again.Judy

It's just a fact that now, three or so months after my diagnosis, is the best time of my life. I'm oddly annoyed at that. I'm not sure if that makes sense. Maybe I'm just annoyed with MS because it's getting in the way of the good part of my life, but the truth is it caused me to get to the good part of my life.

Wow, now that I think about it again that really ticks me off. I'm not being metaphorical, a number of events happened in my life because of me dealing with MS pre-diagnosis, that were all in many ways bad decisions (quitting my job), but nevertheless are very important to my current happiness. I'm not sure how to feel about that.

Beautifully written, Marc. We never know where the twists and turns of our lives lead us. Here's a quote you might enjoy: "We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." I look forward to your next post.

I don't know how you reach in and pull out the things I could put down in words for all to read. You have a true gift my friend. Keep going forward and continue to say what I can not. So glad to have you in my life! xo

Very very good read, thank you. My trouble with the MS (as if there is one!) is that it has made me quite dependent, despite all my efforts. And the best times of my life have been when I was very independent. So now I have to rethink what dependence means and how to live with it and how to adjust my inner reality since my outer reality isn't going to change.Again, so well-written and thought-provoking!

Just beautifully expressed Marc. I recently met with a very wise man that I respect a lot. He pointed out to me that MS was (not so slowly) making me a monastic. He was right, on so many levels. I'm OK with that. It is what it is.

Excellent, Marc! You write so well, and are always such a pleasure to read. Love the Sinatra song choice, too. My daughter and her dance troupe won a national dance competition in NYC back in the 1990's dancing to that song. It brings back wonderful memories for me as I used to be a dancer myself (in my previous life.... ;)

it has been 6 days since your last entry. getting ready for the next "Marc experience." i can feel it coming...

i wish i could make a request. that should be a throwback to the music days. how about --what MS, or any other debilitating illness does to the primary intimate relationship that sends some down to the depths of their Being (TO CHECK IN) and some people to bolt (TO CHECK OUT.) it can be a beautiful collaboration with Karen.

it is obvious that what you write comes from a deep level of inspiration. this may not fit. just know that if there is material, there is a listening as well. ALIYAH

ps. i'm renting a permobil for my daughter's wedding in the city. i challenge you to a race.

Marc this post resonates so deeply with my own experience/perspective living with MS. This portion of your writing "Thus too the moment of diagnosis is an end but also a beginning. Despite the very real hardships and anxieties that come bundled with illness, this new beginning need not be one of unending misery, devoid of happiness and contentment." is my "mission statement" so to speak.

Thank you for your honesty and your open awareness of the fullness of life no matter how difficult it may be one moment...it/life is in a constant state of change...so the next moment might feel exquisitely beautiful and dare I say "perfect" at least in the realm of that moment.

Wow Marc, you have eloquently put into words so many concepts that I've pondered during the last four years. Thank you so much for generously sharing your thoughts and reflections. Your willingness to share has helped me tremendously.

What the diagnosis and disability gives us is Time - that sweet gift we never seem able to find when spending our waking hours in the corporate din. It is so good to step back and rethink all those things that make you happy. I think I need to do this again - don't want to miss one bit of sunshine.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...